I just wanted to wish you, on behalf of myself and the whole team here at MS-UK, a very Merry Christmas and a Happy New Year.
This year we have been proud to commemorate our 25th anniversary of supporting people affected by multiple sclerosis.
We have seen our newest service, MS-UK Counselling, grow rapidly as more and more people seek confidential counselling that is grounded in a knowledge of living life with MS.
Our helpline has answered thousands of enquiries and our Choices leaflets have been downloaded over 70,000 times from our website. We now have over 20 different titles, encompassing a wide range of topics, from diet and nutrition through to complementary therapies.
Our magazine, New Pathways, landed on doormats every other month, connecting thousands of people with the wider MS community. And our wellness centre, Josephs Court, has extended its range of complementary therapies and social activities to better support people affected by MS in our local community.
Next year, we will be launching our new strategy. Until then, thank you for your support in 2018. We couldn’t have done it without you.
Amy Woolf, CEO
Holidays are coming, so here's an update about our opening hours over the next few weeks...
The MS-UK office will be closed from 5pm on Friday 21 December until 9am on Wednesday 02 January 2019.
Josephs Court, our Wellness Centre, will be open during these times:
Josephs Court will then reopen at 9am on Wednesday 02 January 2019.
The 25th anniversary issue of New Pathways magazine is out today. As you hopefully know by now, 2018 is MS-UK’s 25th year as a charity supporting people affected by multiple sclerosis (MS).
For those of you that are more recent subscribers to New Pathways, you may not know that this magazine started out as a leaflet called Pathways written by Judy Graham for MS-UK (which at the time was MSRC). The Pathways leaflet sought to provide people with the information they needed to live well with MS, at a time when there was very little information available, and what was there, was very limited in what it would cover.
Today, life is quite different with an abundance of information available via the internet, but this just creates noise that people need to navigate their way through to get to the really useful information they need. It really is all too easy to get lost in all the research and news, and end up more confused than when you started. But what Pathways set out to do and New Pathways has continued, is to cut through the noise by speaking to people living well with MS now, collect their stories, share them with you, and create a more sophisticated understanding of life with MS. An understanding that balances the facts of life with MS against the experiences of those living with the condition.
We see each person as an individual and treat them with the respect that they deserve; that each one of us is capable of making informed decisions for ourselves about how we wish to live our lives. That we all have the ability to absorb information and people’s experiences, and decide if something is right for us. To recognise that achieving the benchmark of ‘clinically-evidenced’ is not always going to be possible or even relevant for a good number of reasons. There is a huge difference between unproven and disproven. We have always understood that difference and will continue to use this to guide us for as long as we are here and needed.
To commemorate our 25 years, inside this issue you will find an Anniversary Special including a guest feature from Judy Graham, a feature by Tom Cutts who was diagnosed last year at the age of 25 and is coming to terms with his diagnosis, and a number of nods to times gone by.
You’ll also spot references to our history and the theme of 25 throughout this issue, such as 25 ways to raise money for MS-UK and get your pin badge on page 26.
Finally, we bring you all the usual content you have come to expect from us, including three accessible holiday stories - Julie Kicks on Andalusia on page 32, Tracy Brown in Bali on page 14 and our very own Ian Cook holidaying in Benidorm on page 38.
The 25th anniversary issue has been guest edited by MS-UK CEO Amy Woolf.
Fatigue is one of the most common symptoms of multiple sclerosis (MS) and it can often feel overwhelming during the cold and dark winter months. However, with the help of the MS community, we’ve gathered together a few tips and techniques that may help you through!
Firstly, though it may seem counter-intuitive, moderate exercise has been shown to improve resistance to fatigue. Now, we are by no means suggesting that you run a marathon, but a small amount of regular walking, swimming, or yoga, among many other options, could make a positive difference in the longer term. For more information on exercise, please see our Choices leaflet.
Looking after your mental wellbeing is also important. Activities like meditation, mindfulness and relaxation, as well as just being aware of the need to factor in time for rest, are tips that the MS community have shared with us in relation to managing symptoms. This self-aware approach is particularly useful when it comes to fatigue because taking the time to plan activities and daily patterns, as well as breaking down tasks into manageable chunks, can really make things less daunting on a day-to-day basis.
It may seem like a bit of cliché, but we can hardly talk about the usefulness of exercise without also talking about healthy eating. It is well known that eating a balanced diet helps people to maintain good health and feel their best, while poor diet can lead to fatigue. This is no less true when it comes to MS. Supplements, including B12, Co-enzyme Q10, Vitamin D and Omega 3, can also contribute to reducing fatigue, though we suggest speaking to your GP or neurologist before taking anything new. For more information, please see our Choices leaflets on Diet and nutrition and Vitamin D.
Other therapies that some people with MS have found to be helpful include acupuncture, oxygen therapy, and Action Potential Simulation (APS) therapy. Oxygen therapy is widely used across the UK in the many MS therapy centres and those who regularly attend sessions have found that it can greatly improve fatigue levels. To find your nearest therapy centre, use our website.
You can read and download all of our Choices leaflets on our website.
‘Our sister and cousin, Nicola, 48 year old mother of three, was diagnosed with multiple sclerosis (MS) in 2017.
‘Obviously such a diagnosis came as a shock to us all. From the beginning the support she has received from MS-UK has been tremendous. It gave her a forum to discuss her fears and engage with people who also have MS. In turn, it continues to give her strength and courage and is empowering her to live her life to the fullest.
‘Through Nicola we heard about the MS-UK sponsored places at the Royal Parks Half Marathon and as runners, it was an obvious way for us to give back, do an activity that we love, make a difference...all in all, a win-win situation.
‘Out the outset, as busy people, we wanted to keep our fundraising efforts simple to achieve our target of £800.
‘We canvassed family for their suggestions on how best to raise the money and the consensus was very much in favour of fundraising activities rather than just donations. This enabled us to bring our family and friends together and the desire to have some fun along the way!
‘We agreed our two events would be a garden tea party and a quiz to make the most of the lovely summer we had this year. Both activities exceeded our expectations – you can see we raised an amazing amount on our fundraising page!
‘The key challenge for us was to ensure that our guests at both events went away feeling they had an enjoyable experience and the £10 fee was good value. Feedback from both events exceeded our expectations, with suggestions we should set up our own afternoon tea business and turn the quiz into an annual event.
‘We smashed our target and raised approximately £1,200, which enabled us to spend the latter two months focusing on training for the race.
‘Both of us came away from this experience feeling a sense of pride in achieving some personal physical targets (we both set a new personal best) and in our own small way we have made a difference.
‘So what’s next? We are delighted to be volunteer stewards for the upcoming Colchester Half Marathon and looking to engage as many family members. Maybe we will see you there!
Karen and Maxine
MS-UK Counsellor, Louise Willis reveals what you can expect from MS-UK Counselling...
Multiple Sclerosis (MS) can present many physical challenges and some can be identified and treated by the medical profession, but what about the hidden emotional and mental challenges that can be faced?
MS affects around 110,000 people in the UK. Each person affected has a different life story, an individual set of beliefs and values, and ultimately a different way of dealing with diagnosis and the changes that MS can bring. There is no right or wrong way forward, but sometimes some extra support can be invaluable at any stage of MS. From diagnosis to new changes and developments, MS-UK counsellors are here for you every step of the way.
One of our trained counsellors will call you at a time that is suitable for you. We ask that you are alone at this time and in a quiet, confidential place and that you are comfortable as the call can take between 30 and 45 minutes. If you are unable to answer the call straight away, we will always ring back around 5 minutes later.
Yes, counselling is a safe and non-judgmental space for you to talk about any worries you might have about any aspect of your experience with MS. Any information we take down is kept on our encrypted servers here at MS-UK and is not passed on to any third parties unless you ask us to.
We will only break confidentiality in the event of a safeguarding issue which would mean any form of harm to either you or someone else.
We will ask you about what is bringing you to seek counselling and about any mental health issues you may have. We will also ask you what times and days are best for you for your counselling sessions. They will be at the same time and day each week for six weeks.
If you are unable to make one of your sessions, let us know as soon as you find out and we can reschedule. However, if this is within 24 hours of the session you may forfeit the session as all of our counsellors are booked in advance.
After your assessment we will pop a counselling contract in the post, or send it via email for you to sign ready to speak to one of our specially trained MS counsellors.
We look forward to meeting you!
A year, wow, how time flies. At the time of writing this it’s exactly a year since I was diagnosed with multiple sclerosis (MS). Before that day I had no idea what MS was. Now all I think about is MS. Instead of thinking about what I want to do in 3 years time I’m now planning what I can do in 3 hours time. Every day is a different day. On a Saturday night I’m looking forward to my run in the morning and pumped up ready to go…then the morning comes. It’s Sunday. I’m struggling. Time to change my plans.
That is one of the things I’ve learnt most about MS. I’ve always made plans months in advance let alone weeks, but now I look at this in a new light. At first if I missed a plan I would sink to a new level, I felt like MS was controlling my life, I felt that it was the end of the world. Now I look at it and even though I’m still upset, I remember it’s only one day, they’ll be others I can attend. If you have amazing friends like I do then they’ll understand, as long as you let them. This brings me on nicely to what else I’ve learnt.
Talking. Talking about my MS, my depression, my everything is possibly the best thing I’ve learnt since being diagnosed. You shouldn’t have to bottle up what’s inside, it’s scary telling people but how else can someone help you? I’m not afraid to say that I had counselling. I’m not afraid to say I went home and cried after some sessions. I’m not afraid to say it is one of the things that’s helped me the most. It gave me the confidence to speak to my family, my friends, my girlfriend. It’s why I’m happy to be so public about everything I’ve been and am going through! Because of this they all understand what’s happening with me. MS doesn’t just affect the sufferer. I know that people have cried over my diagnosis and the affect it’s had on me, but I also know that being open and approachable about it has helped them. If I had to give one piece of advice to anyone suffering with something it would be to talk about it.
Do you have something you love to do? Love to see? For me fitness is the one thing I love to do. I may complain about running on a cold Tuesday night in Swindon, or a rainy Colchester morning, but once I’m out there I love it. Ok I lie (don’t judge me) but I love to read too. This year I’ve read over 30 books and they’re not just tiny books either! Escaping in to another world, furthering my knowledge in something, allowing myself to become fully immersed in a book has helped me through this year. Find something you love to do. Find something you want to love to do. Hobbies, interests, whatever it is, give it your all and you’ll appreciate it afterwards.
A year on and I still don’t really know what MS is. Does anyone?! I ask numerous silly questions multiple times and I will carry on doing this for as long as I live! One year down and hopefully many, many more to come. I’ll get there one day, maybe come back and ask again next year?!
MS-UK Counselling is a confidential service open to anyone living with MS. You can talk about your thoughts and feelings with a qualified professional that also has an understanding of MS.
‘After missing the chance to run the Virgin Money London Marathon through the ballot, I decided that for 2019 I would fundraise for a charity close to my heart, MS-UK. I'm pushing hard, taking on multiple challenges and races between now and the marathon. So far, fundraising is going ok.
‘My Dad was diagnosed with MS when I was a child. I still remember the day he sat me down and told me. I had no idea how bad MS was or how it was going to change our lives and yet it still tore me apart.
‘Sitting here now typing this still breaks my heart and brings a tear to my eye.
‘For the past 20+ years, I've seen MS take my father away from me. At first, it was only really fatigue that was noticeable and a few days where he wasn't great on his legs.
‘As time went on, he lost the ability to drive and eventually couldn't even walk or feed himself.
‘MS has also damaged his brain, wiping out his short term memory and his ability to talk. This has been the biggest impact on me, not being able to speak to him, ask him questions and all the things a son should be able to ask his father.
‘I regret not making the most of the last good years with him while I still had the chance.
My Mum cares for my Dad 24/7 which really takes its toll on her, she's stubborn though and does everything she can for him.
I chose MS-UK and the London Marathon to show my support for my family and to raise as many funds for such a supportive MS charity that gets much of its funding through the London Marathon charity places.’
You can find out more and make a donation on Gavin's JustGiving page.
Everyone experiences stress in one way or another. It can affect you both physically and mentally, making you feel anxious and impatient. But stress doesn't have to dominate your daily routine.
To mark Stress Awareness Day 2018, we are giving you the opportunity to learn how to focus your mind with a series of stress-busting podcasts hosted by mindfulness coach Zoe Flint. Each step-by-step guide is designed to give you the tools you need to de-clutter your thoughts, focus on the present, and ultimately reduce your stress levels.
It feels a little that people with multiple sclerosis (MS) are stuck between a rock and hard place when it comes to the weather. After the extremely hot summer we’ve just experienced, many people had issues with the heat, and now winter is just around the corner bringing problems and anxieties of its own.
MS symptoms can be exacerbated as the temperature drops. It is not known exactly why the cold has a negative effect on people with MS symptoms. Some of the symptoms that can be exacerbated by the cold weather are:
One additional issue may be the shorter days and not being exposed to as much direct sunlight, therefore not getting as much natural vitamin D as in summer months. The lack of sunlight, the shortening of the days and the difficulties getting out and about can also be contributing factors towards negative mental health with potentially worsening anxiety and depression.
Like many other aspects of living with MS, a little planning and forethought can go a long way when coping with activities in the winter.
If you want to chat about any aspects of living with multiple sclerosis, the MS-UK Helpline team are here to help. Just call us on 0800 783 0518, email us or use our live web chat service to get in touch.